Fairfield mum extends support to parents of children with
undiagnosed conditions

HAVING a child with a serious
illness or disability is overwhelming enough for a parent, but
imagine if it was something so rare there was no
diagnosis.

Fairfield resident Heather Renton's daughter Becky, 8, is among
thousands of Australian children with an undiagnosed genetic
disorder.

"No one chooses to have a child with a disability but
when you do, you play the best card you can." - Heather
Renton

Becky's genetic
disorder is undiagnosed.Source: News Limited

Becky's condition has caused serious physical and intellectual
disabilities but has no label to describe it or pattern for parents
to follow.

"Becky was born with low muscle tone, vision-impaired and an
intellectual disability, her left eye floats, she didn't walk until
she was three or talk until she was four," Ms Renton said.

"She had numerous doctors' visits, countless tests and was
misdiagnosed twice - welcome to the world of undiagnosed
disorders."

Ms Renton said when she went to look for a support group to
connect with others experiencing a similar isolating journey she
discovered there was nothing in Australia.

But she found there was a group called Syndrome Without A Name
in the UK, so she decided to start a local group.

"Becky was born with low muscle tone, vision-impaired
and an intellectual disability, her left eye floats, she didn't
walk until she was three or talk until she was four," Heather
Renton.

Two years after starting SWAN Australia, the not-for-profit group has 70
members but it runs on the smell of an oily rag and needs more
funding to continue offering opportunities for members to connect
and give each other emotional support and share information.

Ms Renton has applied for a Leader
Local Grant so SWAN can buy a laptop computer and printer to
communicate with members about events and encourage social
inclusion.

"We provide an avenue for parents to discuss coping strategies
with each other and aim to decrease feelings of segregation," she
said.

SWAN also aimed to raise awareness about the poor level of
funding for genetic research and testing, which caused delays in
test results.

Ms Renton said although Becky's behaviour was sometimes
challenging, she loved her to bits.

"No one chooses to have a child with a disability but when you
do, you play the best card you can," she said.

Ms Renton said Becky brought out the best in her big brother
Dominic, 11, teaching him to be kind, caring and accepting.